Monday, December 20, 2010

The History of Her Blood

I expect that most of you will know the story of HeLa. Thanks to some fairly meticulous note-taking, I can establish that I first came across it in 2004 and that for a while I considered writing about it in my dissertation. But then, fascinating and apposite as it was, it was simply too good for that particular purpose: it was a story with too much history, and it was a history that I didn’t feel I could do justice to. I turned to the past of my own family instead, to something to which I felt that I belonged and that I could control, in order to argue for the historical class divides in documenting and memorialising the individual. I compared the minute and near-obsessive recording of the childhood of Winston Churchill with the single surviving photograph of my maternal grandmother before the age of 50. Nowadays every one of us in the developed world is a Churchill, I concluded. And what did that mean?

There are but a handful of photographs of Henrietta Lacks as a young woman. She is a little girl. She marries. And then some time later she poses for the shot reproduced above, not knowing – of this we can be certain – that the image would end up in countless articles and essays and blog posts such as this one, as well as on the cover of a best-selling book, each one of those reproductions, an appropriation. But we are just compelled. That’s what the story of HeLa is, above, all – compelling.

Henrietta Lacks died after a brief and agonising battle with cervical cancer in 1951, when she was just thirty-one years old. After the initial examination, her attending physician at Johns Hopkins in Baltimore – one of the few hospitals that would treat African Americans without charge at the time, albeit in segregated wards – had given a sample of her tumour to Dr. George Gey, a researcher at the institution who had been trying unsuccessfully for years to grow human cells outside the body. Those particular cancer cells were to be the first that proved capable of surviving on a dish, where they thrived in fact beyond anyone’s imagination, growing at an even faster rate than they did inside of Henrietta. It was soon established that the cultures were capable of spawning an entire new generation with each passing day. When news reached him that Henrietta had died as a result of this astonishingly aggressive tumour, Gey sent his laboratory assistant to collect a second sample from the coroner in charge of the autopsy. On neither occasion was consent sought from either the patient or the family, as was customary at the time (and it remains something of a murky area to this day). But Henrietta’s cells weren’t like any other specimen collected to date: they could grow, and grow indefinitely. It was the first immortal cell line. Gey named it HeLa, after Henrietta Lacks, but spoke of their ‘donor’ no more. She no longer mattered.

HeLa’s first job was to help in the fight against polio. A cell production factory was set up for this purpose at the Tuskegee Institute (yes, that Tuskegee Institute) capable of producing twenty thousand tubes of HeLa, or about 6 trillion cells, every week. At this early stage it was all still done in the name of science and reputations, but soon the range of applications that HeLa cells made possible gave way to commercial exploitation. Companies like Microbiological Associates began producing HeLa cells on an even larger scale, and this time for gain. The biotech industry was born.

HeLa cells were sent into space by the Soviets and NASA to test the effect of weightlessness on human tissues, they were cloned, they were used to test and produce vaccines and drugs, study cancer, map the human genome and engineer in vitro fertilisation. And then in the 1960s scientists found that they were able to produce other cell lines that weren’t HeLa, and with growing frequency. It became possible to create libraries of different human tissues to experiment on, except some researchers became suspicious. Stanley Gartler was the first to opine that all those other cell lines might not be different at all – that they could all have been taken over by HeLa due to the inadequate containment protocols in medical labs, and that that’s why they grew so successfully. This catastrophic hypothesis took years to gain acceptance, but when it finally did, it motivated scientists to approach the Lacks family. It was the first time since Henrietta’s death, more than two decades earlier.

Henrietta was buried by the grove in this picture, outside of Lackstown, in un unmarked grave not far from her mother’s headstone. Her principal and most dedicated biographer, Rebecca Skloot, has described ‘three body shaped indentations’ in the ground (121), any one of which could be Henrietta. She had been buried without a coffin, and when her body decomposed, the ground beneath it sagged in the shape of a person. I find this image heartrending: the empty space left by the body, the lost knowledge of which of the plots was hers. It speaks to me not only of her family’s dire poverty but also of a severed bond of memory, of a personal story that is not carried forward. And I don’t mean the story writ large: the Lackses had no reason at the time to suspect that Henrietta would ever become an important and emblematic figure. They simply ceased to speak of her. It was their way to cope with her sudden and traumatic departure.

Thus a quarter of a century later, when the family learnt of HeLa, they had to contend not only with being reminded of what their wife and mother and sister had been through, but also of the extraordinary second life she had since been living, completely unbeknownst to them. Who was this HeLa, this otherworldly double that was being sent into space and bombarded with viruses and experimental drugs? Could she feel pain? Did clones of Henrietta walk the streets? Nobody bothered to explain the intricacies of human cell experimentation to the Lackses, at least not in terms that they could understand. They were urged instead to give blood samples, ostensibly so that the doctors could find out if they had what she had. What the scientific community needed was in fact a way to identify Henrietta’s genetic material so that they could tell which cell lines had been contaminated by HeLa.

***

Whenever the story of Henrietta Lacks is told, due mention is made of the fact that her descendants cannot afford to buy medical insurance and thus benefit from most of the advances that her biological material made possible. Skloot writes this of Henrietta’s middle child:

Sonny had a quintuple bypass in 2003, when he was fifty-six years old—the last thing he remembered before falling unconscious under the anesthesia was a doctor standing over him saying his mother's cells were one of the most important things that had ever happened to medicine. Sonny woke up more than $125,000 in debt because he didn't have health insurance to cover the surgery. (306)

Yet in most summations the focus goes back to the original sampling of the tissue, at a time when neither law nor common practice dictated that consent should be sought or information given. Your body, everyone’s body implicitly belonged to science. And neither George Gey nor Johns Hopkins made money out of creating or distributing HeLa. But what about in the 1970s, when the Lacks family was asked to give their blood? By this stage HeLa was the key raw material to a multi-million dollar industry, and it’s not as if the proceeds where being redistributed to all of humankind in the form of equal access to medical advances. It ought to have been well understood at this point by even the most naïve of researchers that the genetic information of the members of the Lacks family was worth a lot of money to a lot of people. And yet it was solicited again free of charge or obligation, under the guise of a concern for their health and providing them with a service.

And so the Lackses where defrauded twice: of their property, and of their agency. To this day, the family’s best shot at a belated economic redress remains the foundation set up by Rebecca Skloot though the proceeds from the book that tells their story, which is the third thing that they (we) came for. Something else that was theirs, and has become ours. Private pain, and how they dealt with it; medical records; personal histories of at least two generations of the Lacks family: they are all in the public domain now. There was simply no way to protect the story once the family name had been leaked to the press, and the Lackses did well to entrust its most extensive, definitive treatment to a sensitive and capable chronicler in Rebecca Skloot.

The Immortal Life of Henrietta Lacks is close to restorative in how it gives a voice to the family and endeavours to correct the many discrepancies and errors that had accumulated in years of less painstaking accounts. Significantly its central character isn’t Henrietta, but her daughter Deborah, the one who was most desperate to understand and remember: it was knowledge, above all, that she felt deprived of; she, who had no memory of her mother – who had died when she was fifteen months old – and had had to contend with her family’s reluctance to speak of her. In the end one gets the sense that Deborah found genuine comfort in coming to terms with Henrietta’s far more intricate and bewildering afterlife than in the ordinary life she couldn’t get access to, although that was far from a painless process either. In one of the book’s most memorable passages, Skloot tells of the exorcism performed on Deborah by her cousin Garry, a preacher, who succeeded in relieving her of the burden of that far too imperfect memory, which had brought her close to a complete physical breakdown.

Which brings us back to that remarkable presence/absence: a woman who has been dead for half a century and whose body has left an empty space in the ground where it was laid to rest, but whose surviving and constantly reproducing cells have been estimated to weigh today an aggregate of over 50 million metric tons (‘an inconceivable number,’ remarks Skloots, ‘given that an individual cell weighs almost nothing’ 2). And then there’s the weight of the story itself: all of the articles and the scientific papers and the blog posts, circulating electronically or in print, but never weightlessly, and of course the book, each hardback copy weighing 626 grams, with tens of thousands of copies sold. That ubiquitous image. And then the advances, the procedures, the devices, and the stock in the companies that produce and exchange them. All those nodes that cannot be disentangled: human lives, hardware, symbolic abstractions. Consent forms, medical records, family photos. Invisible cells that hop on specks of dust and move from dish to dish inside of laboratories.

At its most emblematic, the story of Henrietta Lacks is the story of the Social, of its irreducible complexity, of its permanently unstable categories, of its capacity to endow inert matter with layer upon layer of meaning. It is a story of race and class that was played out at the same time as the project of immortality through science was being articulated for the consumption of the white elites, who got to enjoy longer, healthier lives thanks to the infinite dissection of that single black body. It is, finally, the story of the elisions that are necessary in order for such fantasies to exist. As in the digitisation of the human on which the idea of computer-mediated immortality rests, Henrietta Lacks had to become HeLa – a file name – and all redundant aspects of her being had to be compressed, reduced into an algorithm. Likewise her family, her background, the social texture of her life had to be made irrelevant and quite simply forgotten. Two decades later, when it became necessary to involve Henrietta’s relatives, kinship had to be defined solely in terms of genetic information that could be retrieved in a single sitting, ensuring that there would be no ongoing relationship with the owners and carriers of that information.

They, as Henrietta before them, had to become the others whole lives are of no concern, a recurring subject of this blog this past year. But there’s another aspect to this: using the first two letters from your name and your surname to designate a part of you, or your genome to describe your whole person, are but two ways of making the subject fit into a template. Think about the formal characteristics of a Facebook profile, or the space that you are given to form an utterance on Twitter, and how they constrain the kind of person you can be, the range of what is possible for you to say. What elisions does that lead to? And conversely, how do those constraints define the non-subjects, those who simply cannot get online and speak or be spoken at all? I’ll make this one of the topics for next year. Have a good break, and as always thank you for reading.

This recent episode of the Radio Lab podcast series on 'famous tumours' (28 min mp3) is a very accessible introduction to the story of HeLa, with recorded material provided by Skloot including at around the 20 minute mark what I have referred to in the post with a little license as Deborah's exorcism.

With many thanks to Jake for his help with a small but naggingly elusive piece of information.

12 comments:

Thanks for that GiovanniI have to say I have never heard about this and it is a real eye openerOf course you do have to be careful when judging past actions with to-days morals but still

As an exanple I have been doing some family researchA 7 year old boy taken to sea, his job to issue the salt to the cod fishermen, that would be child abuse now but that is the way it was in 1760. His father was the captain and he did set us the family up financially but his mother cried when she saw his cracked hands when he returned

And, indeed, how does Bat Bean Beam represent you? Thanks, Gio - it's been another great year of writing from you. My favourite was your piece on the Shell Guide. I look forward to your new writings next year!

Yes. One hates it make it about oneself (okay, one doesn't), but besides the always tricky business of self-reporting on these things, there is much still to be said about blogs as a social writing platform, as opposed to just social, or just writing. As evidenced for instance in the art of the blogroll.

I heard about this horrifying story for the first time in an NPR radio review of the book. Yet surprisingly, it had not occurred to me to approach the story from the angle of memory, because I was so incensed over the unauthorized use of this woman's body, and the obvious connections with her race, class and gender. It is hard to say what the most grievous crime here is -- the initial unethical use of Henrietta's cells, or the erasure of her memory on a personal, familial and collective scale.

Perhaps influenced by the image of the educational video, in the tomb photo, I see the shadows of the tree branches visible on the grass as cellular, spreading out across the earth.